I am in receipt of your email dated 22 November, regarding Enzyme Replacement Therapy (ERT) for sufferers of Pompe Disease. I understand you have already been in contact with Ms Allyson Lock on this matter.

You state that your reason for not supporting funding for ERT is – and I quote you – that “as a Minister I am prevented by law from intervening in PHARMAC’s decision-making process”.

I refer your attention to the 2008 election campaign where your Party pledged to extend herceptin treatment for breast cancer, from nine weeks to twelve months, even though Pharmac had up to that point been resisting all such requests on the grounds of cost and efficacy.

Post election, after becoming government, you implemented your election promise, and you stated in a press release dated 10 December 2008,

“We are extending funding for Herceptin to allow patients and their doctors to have a choice of a 12 months course. The nine-week treatment option also remains funded and available.”

I refer your attention to the following press releases from yourself and the Prime Minister, announcing additional funding for herception, despite PHARMAC’s initial decision opposing the move;

On behalf of Hon Tony Ryall, Minister of Health, thank you for your further email of 22 November 2012 about ERTs.

The Minister has asked Ministry of Health officials to advise him on the matters you have raised. Please be aware that due to the large volume of correspondence we receive, a personal reply to your letter may take some weeks.

Kind regards

Nicole HinePrivate Secretary – HealthOffice of Hon Tony Ryall

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*** Up-Date ***

Finally, Mr Ryall’s response, dated 5 December was as follows,

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It is interesting to note the following comments from Mr Ryall,

1. “… in December 2008, the Government decided to fund herceptin outside the PHARMAC model…

[…]

…The 12 month course of Herceptin was funded directly by the Ministry of Health…”

As Ryall stated in his 22 November correspondence,

“I am prevented by law from intervening in PHARMAC’s decision-making process.”

But by “tapping” into the Ministry of Health’s budget, this allowed National to circumvent the legislation surrounding PHARMAC’s independence and sideline that organisation entirely. In effect, the Ministry was turned into a giant “slush fund”, to allow National ministers to pay for their election bribes promises.

Allyson Lock and her six fellow Pompe disease sufferers could be funded by precisely the same means; directing the Ministry of Health to purchase the Enzyme Replacement Therapy (ERT) necessary to keep them alive.

But it’s not an election year.

The Minister’s final statement was that “… in the current fiscal environment, unfortunately funding is not available for all treatments.”

It seems paradoxical that whilst National ministers cannot afford life-saving medicine “in the current fiscal environment“, that they have found funding for the following;

$21.9 million spent by Treasury on consultants in 2012-13 (compared to $2 million in 2007-08), including $20,000 paid to Cato Partners NZ to redesign the Treasury website and $37,000 paid to Bill Ralston and Janet Wilson for media training (Source)

$54 million spent by state owned enterprises on “performance bonuses” to their employees (Source)

$75 million spent from 2009-11 to movie studios in taxpayer funded subsidies (Source)

$120 million in subsidies paid to Warner Bros to produce “The Hobbit” in NZ (Source)

Thank you for your letter dated 5 December explaining the circumstances and means by which Herception was funded outside of normal PHARMAC channels. Using the Ministry of Health to directly fund an extension of Herceptin for breast cancer sufferers was certainly a novel approach.

It occurs to me that the same process can be employed to fund Enzyme Replacement Therapies (ERT) for the seven New Zealanders who are suffering from the terminal condition known as Pompe Disease.

I do not accept that, as you suggest in your 5 December letter, that ” in the current fiscal environment, unfortunately funding is not available for all treatments” since your government seems to find funding for e vents such as the Rugby World Cap ($220m); advertising by the NZ Defence Force ($20m); bonuses for state owned enterprises employees ($54m); millions spent on tax breaks and advertising campaigns in the movie indsustry, etc.

There appears to be no valid reason that Pompe Disease sufferers are not offered the same “lifeline” that you extended breast cancer sufferers in 2008.

It is my contention that through clever negotiations, government should be able to secure necessary ERT medication at a reasonable price, perhaps by offering contracts in others areas.

At least we have established that government is not constrained by legislation surrounding PHARMAC and that flexibility exists with funding mechanisms.

I urge you to reconsider this issue and to find ways and means to facilitate a positive outcome for Pompe Disease sufferers.

Regards,-Frank Macskasy

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After one week, no response – or even acknowledgement – has been received by this blogger to the above email. The Minister appears to have ‘gone to ground’ on this issue.

It seems fairly clear to this blogger,

When National wants something – it will find the necessary money required.

This is not a matter of available funding, but rather one of political will (or lack of).

There seems no difference between funding herceptin for breast cancer sufferers in 2008, and funding medication for Pompe Disease sufferers.

If money was available from the Ministery of Health (thereby circumventing the law preventing Ministerial direction of PHARMAC to purchase specific medicines), then one has to wonder why Ryall does not employ the same mechanism for Pompe disease sufferers?

It is SO frustrating when they just ignore us! Whenever I ask the hard questions I get fobbed off, shoved around and cut off. You can bet, if anyone from Pharmac or the National Party got Pompe disease, they would all of a sudden fund it. I would like to see them fund it without using it as an election year bribe, as it might show they actually were concerned about us, but they aren’t! Plus, only 7 voters aren’t going to matter too much to John Key!
It is obvious there is plenty of money available, and I’m really wondering why Pharmac are digging their heels in so much on this. They are using dying people to manipulate pharma companies, I think.

just fund the ERT for these people!! I can not believe how much is spent on funding movies and others things in NZ….maybe you need to become a movie director Allyson Lock and get some of those funds in your pockets and fund the ERT yourself!!

Bloody typical of this ripoff government…Look after them selves and there rich mates, never mind the people of this country and the sick!!!…It will come full circle and bite them where it bloody hurts…Lying, arrogant mongrels!!!

jayne hall :
i contacted fair go a while ago and told them about allysons plight as yet have received no reply at all maybe all this above could be faxed through to them so they can see the bigger picture

Send it to campbell live I guarantee they will pick it up no trouble at all.

I love what you’re doing here Frank. It’s awesome to see someone asking the questions, not backing down, and not taking the shallow “full of so much bullshit you can’t even find the answers” replies as a proper answer – love it!

I love what you’re doing here Frank. It’s awesome to see someone asking the questions, not backing down, and not taking the shallow “full of so much bullshit you can’t even find the answers” replies as a proper answer – love it!

Thanks, Cody. I’ll keep at it – at least until they carry me away.

I’ve heard on the “grapevine” that members of Parliament do read this Blog. So the “message” may be percolating through to them…

I hate to say it, but the only way Key will act is when Alyson is in hospital with the disease taking it’s toll, and TV cameras filming her. Key doesn’t react to anything else except where it affects his public image.

Clive, the trouble is, the main stream media seem to have lost interest in this. This is extremely unfortunate, because i feel the only way this medication will be approved is if John Key is publicly shamed into funding it. And by the time i’m in hospital, my life is bascially over because there is no “home care” available to people who are permanently mechanically ventilated. So there will be no coming home, no living with my children any more, my husband will have to leave his job, we will lose our house (can’t pay the mortgage with no job), the only way my children will ever see me again is hooked up to a wall in a hospital. This will cost $3000 per day, much more than the medication needed to help me avoid the hospital. Crazy eh?